Patient Grief Deserves More Attention
SAN DIEGO—During a session at ACR Convergence 2023, mental health professionals and patients agreed that the rheumatology field needs a greater appreciation of the grief patients feel at the time of diagnosis and throughout their lives. Such an understanding from providers may ensure patients get the help they need.
A personal take: Rebecca Gillett, MS, OTR/L, an occupational therapist at Insight Wellness in Centennial, Colo., recalled the time when, inexplicably, she had pain in her right wrist so extreme that it took her an hour to get ready for work. When she got into her car, which was a stick shift, she realized she could not drive it.
Mrs. Gillett
She called her mother and broke down. “Everything hurts,” she said.
Mrs. Gillett was diagnosed with rheumatoid arthritis (RA) a couple of months later. But she also went through two years of anger and denial after diagnosis. The emotional toll didn’t stop there—each time her condition worsened, she grieved.
“You have to help your patients build resilience,” Mrs. Gillett said.
A Starting Place
Healthcare professionals can help by validating their patients’ emotions, listening to both what a patient is saying and not saying, asking how they can help and following up with patients via email or phone or during their next visit. According to Mrs. Gillett, providers can suggest patients seek mental health support, get involved in a community of people who’ve been down the same path or begin physical and occupational therapy. Patients may also benefit from meditation, prayer and journaling.
“Grief can mean change. It’s not linear. It doesn’t go away. It’s always an underlying thing that you feel. But we adapt, and we find resilience in our life,” Mrs. Gillett said.
Dr. Wells
What Is Grief?
According to Courtney Wells, PhD, MPH, LGSW, assistant professor in social work at the University of Wisconsin, River Falls, who has had RA since childhood, grief is pervasive among people with RA—not because it involves the death of someone, but rather because it is the emotional, cognitive, functional and behavioral response to any kind of loss.
“It can be the death of your functioning. It can be the death of what you thought your life was going to be like or your childhood,” she said.
Also, grief comes in many forms—not just the grief we experience when someone dies, Dr. Wells noted. Anticipatory grief occurs when we are expecting a loss, and prolonged grief—an unresolved form of grief formally known as complicated grief—has become a diagnosis of its own. The hope is that patients grow into integrated grief, which is a form of grief that doesn’t go away but becomes manageable, even if there are times when patients feel overwhelmed, she said.
Dr. Wells asked the audience to close their eyes and think about someone or something they’d lost and think back to how it felt. This exercise can help providers connect with their patients. She said, “You can feel what that has felt like and relate to them and have that empathy.”
Express empathy: Dr. Wells also spoke on behalf of Natalie C. Datillo, PhD, MHA, a clinical psychologist who was unable to attend the session, offering guidance on how providers can bring warmth to the patient encounter. Providers can ask patients how they are addressing their pain and what their understanding of their condition is. Providers can bolster connection during these conversations by using eye contact, not sitting too far away, and using both touch and visual inspection.
“Patients want to be asked how they’re doing and want you to care how they’re doing,” Dr. Wells said. “They really want their doctor to get what’s going on, to get the experience of them.”
Building trust through these empathy-building steps can help patient medication adherence and overall outcomes. She said, “It actually very much impacts people’s health when you have a trusting relationship [with your provider].”
Mental Health Concerns
Dr. Wells noted that as many as 60% of adult patients with RA have an anxiety disorder or another mental health condition. About a third of adult patients with RA have depression.1 Evidence increasingly suggests that a bidirectional relationship exists between mental health conditions and rheumatic conditions, she noted.
There is a difference between grief and depression. Grief tends to involve more overt emotional pain related to a loss, and depression tends to involve a numbness and apathy and does not improve with time. Dr. Wells said, “I wouldn’t expect most rheumatology providers to be able to differentiate those pieces, but you would be the person probably who’s seeing it.”
These conditions often look similar but require different treatments. Looking out for grief and depression may prompt a rheumatology professional to refer a patient to a mental health expert.
Thomas Collins is a freelance medical writer based in Florida.
Reference
- Hill J, Harrison J, Christian D, et al. The prevalence of comorbidity in rheumatoid arthritis: a systematic review and meta-analysis. Br J Community Nurs. 2022 May 2;27(5):232–241.
